Lonliness of The Long Distance Runner

The tough of the track
With the wind and the rain that’s beating down on your back
Your heart’s beating loud and goes on
Getting louder and goes on even more
‘Til the sound is ringing in your head
With every step you tread
And every breath you take
Determination makes you run never stop
Got to win got to run ’til you drop
Keep the pace, hold the race
Your mind is getting clearer
You’re over halfway there
But the miles they never seem to end
As if you’re in a dream
Not getting anywhere, it seems so futile  (Iron Maiden, Loneliness Of the Long Distance Runner)

I felt like this recently. Firstly it started withe Dimity controversy. We have been fighting this battle for so long. For me it is about accurate and truthful information. Particularly for parents of deaf children. I have been fortunate to have worked with families of deaf kids over a number of years. It’s hard work for the parents, they are bombarded with information left right and centre. As soon as the child is diagnosed deaf the first thing they will hear from their doctors and experts is usually about SOUND, about enhancing residual hearing and cochlear implants. In this day and age there are still experts that will tell you that to teach a child to hear with either their residual hearing or a cochlear implant they must focus on hearing and listening and that sign language will hinder the acquisition of listening skills. This is despite the fact that research abounds that deaf kids with access to speech and sign language perform better in language receptive tests. There is even research that shows that kids exposed to sign language early are actually better lip-readers and have better English literacy. But all of this is ignored.

For example Mogford (1987) concludes, “that whether the deaf child’s education was carried out by means of oral speech or by manual communication seems to have no influence on lipreading skills. “  In further research, Arnold and Köpsel (1996), find,  “..that mastery of sign language, assessed by teachers, does not correlate with lipreading, although it does correlate with reading, which, in turn, is positively correlated with lipreading.”  The latter research suggests that deaf children who have mastered sign language perform better in literacy tasks such as reading and writing and this mastery of literacy can, in fact, enhance the ability to lip read. It is generally accepted acquisition of sign language has no negative impact on the proficiency of the acquisition of speech and listening an can, in fact, enhance the acquisition of spoken language through reading and writing. Put simply because these deaf kids have access to more information through sign language, and reading they have a stronger vocabulary which is then translated into stronger oral skills such as lip reading and speech development. Consider a child that signs. Lets pretend someone  signs enormous to them.  When they see the sign enormous they are also likely to see the mouth pattern enormous, with what hearing they have they may hear the phonetic sounds of enormous and so all all in one you have the concept the mouth pattern and the sound represented .. connect connect connect. Makes complete sense doesn’t it? Sadly to people like Dimity and her esteemed colleague Dr Bruce Sheppard it doesn’t.

Dr Sheppard is oft quoted in The Rebuttal for his ABC radio interview. For those that cannot remember this we will repeat it again. ”

… But especially we wanted our children to develop language. Because it’s not well known that the average profoundly deaf person who signs generally doesn’t develop terribly good language and they often can’t understand a great deal of what they read and they can’t make other people understand what they’re thinking.” (radio interview with Phillip Adams in 2006)

This is, of course, poppycock. Research shows that kids that develop good proficiency in sign language often perform superior to kids only exposed to oral language. Yet Dr Sheppard has no qualms in  misleading the public to believe the opposite so that he can attract money to his oral Centre for deaf  kids. Dimity, likewise, misleads the public with theatrical statements about the eradication of deafness (like polio) and how deaf kids can be FIXED with today’s technology.  That Dimity and Dr Sheppard are borderline LYING to attract money to their deaf centres is not far from the truth. The scandal of all this is that it gives parents a false sense of hope and later if their kids don’t perform as well as they thought they should they often do not blame the EXPERTS they blame themselves for the lack of progress by their kids. I cant begin to tell you how many times I have heard parents say to me, “It is my fault, I didn’t do enough to talk to my child.” Its a wicked game that Dimity and Dr Sheppard are playing.

But the miles they never seem to end
As if you’re in a dream
Not getting anywhere, it seems so futile.

And then last week there was that conference.  This huge conference centering on employment support for people with a disability is being organised by a company that dubs itself  “THE NATIONS LEADING EVENT ORGANISER.” Its not a cheap conference at $2099 a pop for the two days. I got hold of the program and was shocked to see that not one organisation that represents disability that is run by people with a disability was on the agenda. A few emails to my contacts showed that they were not even aware of the conference. I managed to get myself in through my involvement with a high ranking Government committee that I am part of. I also managed, over a period of time, to get the conference organisers to offer a cheaper rate for “charities” to attend the conference. But this rate at over $1000 was still prohibitive.

The Government committee organised my registration. At my request they checked that sign language interpreters would be provided. They were assured that they were. I told them that until I had heard who the interpreters were I would not hold my breath that they would do as they had promised. This was back in August. Last week the Government committee that I am part of contacted me and asked which interpreters I wanted for the conference. Alarm bells immediately rang. I emailed back and asked why they were asking. I was told that the conference organisers had stated that they were unable to provide interpreters. The Government committee, wanting to ensure I had access, were willing to cover the cost.  They must have been a bit taken aback when I told them that there was no way that they should pay and to, “leave it with me.”

So the conference organisers received a rather blunt email from me, CC’d to several of their major speakers and disability advocates around Australia pointing out that it was not acceptable that they would not provide interpreters when they assured me they would. I had taken the liberty to contact an interpreter provider agency to see if they could provide for the conference. They assured me that at the time of the conference there would be no problems to organise what was needed. I pointed this out to the conference organisers and stated that, “One can only assume that you have baulked at the cost of providing the interpreters.” I let it be known that although the Government Committee were willing to foot the cost that they should not have to and that it was the responsibility of the NATIONS LEADING EVENT ORGANISER to plan for these access needs and not add them on later. In short I said cough up and that the NATIONS LEADING INTERPRETER  PROVIDER were standing by to arrange the needed interpreters. ( I didn’t say that but I wish I had.)

Within 5 hours the CEO of the conference organiser company emailed back. He said if the Government committee were willing to cover the cost he would be MORE THAN HAPPY TO NEGOTIATE WITH THEM. ( I am sure he would) He pointed out that my registration fee was $2099 and that the cost of the interpreters was $2800. Meaning they would make a loss of $701 on my registration.  Said the CEO, “I am sure you will understand that this cost is not commercially viable.” Of course this triggered a second email from me where I pointed out that under the Disability Discrimination Act that his company had an obligation to make the conference accessible, whether it be by interpreters, captioning or other means. I pointed out that they could try to plead Unjustifiable Hardship under the DDA but given that they were about to make many thousands of dollars profit on a conference about disability I didn’t think they had much hope of that. So I reiterated that they needed to pay and organise the interpreters as soon as possible or that I would make an official complaint to the Australian Human Rights Commission.

In the middle of this the company received an email from the NATIONS LEADING DISABILITY ADVOCACY ORGANISATION supporting my stance and urging the company to review its policies immediately. I also received several emails of support from people that I had CC’d including one who threatened to withdraw as a speaker if the company did not comply. So anyway I sent this email at 10pm. At 9 am next day the company emailed me back stating they had reviewed their policies and that they would provide interpreters, apologised for any stress they caused and said, and this made me smile, that they looked forward to seeing me at the conference.They also confirmed that at all future conferences they would ensure access was planned after receiving an email from one of the people that I had  CC’d asking if they could ensure that this sort of thing never occurred again.

SUCCESS???   Well perhaps but in today’s day and age where the NATIONS LEADING EVENTS ORGANISER organises a conference about DISABILITY, does not plan access, is unaware of  its legal obligations and attempts to shift the costs and responsibilities to others one can not help but be appalled.  (They actually said they might consider paying some of the cost if they could get a cheaper quote from THE NATIONS LEADING INTERPRETER PROVIDER.)  It’s no success at all, it shows a distinct lack of progress when people with disabilities must CONSTANTLY go through this crap whenever they want access.

Run over stiles across fields, turn to look at who’s on your heels
Way ahead of the field, the line is getting nearer but do you want the glory that goes
You reach the final stretch, ideals are just a trace
You feel like throwing the race, it’s all so futile

Run on and on
Run on and on
The loneliness of the long distance runner   (Iron Maiden, Lonliness of the Long Distance Runner.)

And we run on simply because the alternative is unpalatable.

 

 

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One thought on “Lonliness of The Long Distance Runner

  1. In many ways, this experience (the Conference Organiser stuff) has been a very satisfying one. I regret that you, Gary, had to go through the crap and I wish you never had to…..however let me say that as one of the peoplke that was included in the CC email, it was beautiful to see a variety of people come to your support in amazing ways. It was an example of the most powerful example of support and solidarity I have seen. I would be horrified if his organisation acted like this again, and so I might suggest that the heartache that you so unfairly endured, has paved the way for so many other Deaf people.

    It is very satisfying when ‘trail blazers’ have the energy and the balls to go the distance. Not everyone is in a position to do what you have done, so thanks mate. I know, you’re not looking for a pat on the back, but thanks!

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